Monday, January 31, 2011


1 large butternut squash, cubed
2 medium onions, cubed
6 garlic cloves, smashed
2 tbsp vegetable oil
Unlimited CUTE

We made low-calorie butternut squash soup for dinner in an effort to help Daddy as he battles back from five broken bones in his foot and almost three months of recovery.

In order to "help," Esther-Faith had to get her braces on and get into the learning tower by herself.

I will admit, I was reduced to tears as I watched her don her braces, push the learning tower to the island, and climb into it.

All by herself.

I know that by now, nothing she does should surprise me, but I'm amazed by her every day.

Prepping the veggies for roasting.

She misses her real Nana something fierce.
So, she insisted that the Nana that
never leaves her side help with the
soup preparations.

Sunday, January 30, 2011

When Things Don't Go As Planned

It has been two weeks since I have been able to even make it to a computer. My usual post is always on Saturdays....but, our life has taken a different direction since Jan 20th.

If you all remember, our sweet little Madilyn headed into surgery on Jan 20th. She had to have another de-tethering or her spinal cord. This was number 4 for her. Things went really well during surgery. Her surgeon was able to remove almost half of the lipoma and completely free up her spinal cord which was attached to the dura. It took them over 6 hours to complete the entire procedure.

Having walked this road before, we were prepared for our normal. After 72 hours she should have wanted to move into a sitting position. This did not happen. Her pain was greater than we had ever seen before. The intense spasms never stopped. We all began to worry.

Madilyn's surgeon quickly got PT involved to see if they could get her moving. It was frightening because of her pain. Then once her feet hit the floor....we knew that something was wrong... Our worst nightmare was playing out before our eyes.

Sometimes....things don't always go as we plan. Our plan was to have surgery and leave a week later. Madilyn's body changed all of that. After 7 days, we had to be admitted to the rehab unit of Children's Hospital. I was scared. I had no idea this floor even exsited. It is a world all of its own. The goal get Madilyn walking again.

So, after a good long cry in the shower by myself, that Momma strength kicked in and I was on board. We have quickly adapted to where we are and we are working like crazy with her therapists to have her walk out of here on Tuesday.

I could choose to get angry over our circumstances. I could choose to be negative. But, as I stated early this year....I am going to choose HOPE! It will be a while before things are 100% for Madilyn....but, we will reach for it and keep reaching for it.

The Director of the Rehab unit came to her room yesterday morning and looked at me and said..."You are the best Mom on this floor. You are full of hope and push Madilyn to get moving!" I was so touched.... I am determined to move forward. Yes, I do cry. Yes, I am scared. But, with the support of all of our family and friends we will overcome.

Best Wishes to each of you,
Jill....aka....Madilyn's Mom

Thursday, January 27, 2011

Take THAT Spina Bifida!

Hi, friends!
I've asked Kari if I can start contributing a regular blog entry titled "Take THAT Spina Bifida!" We say it on Facebook and on Babycenter and on our blogs and probably in person too. Every time one of our kids does something that a doctor said they'd never do--"Take THAT Spina Bifida!" Every time one of our kids works so hard for weeks or months or years to get to a certain milestone--"Take THAT Spina Bifida!" And every time one of us parents overcomes the trauma of the pregnancy, the NICU, the waiting, the hospital stays, the every day grief--"Take THAT Spina Bifida!" You will not win! We are redefining you!

For my debut I was going to take a video of Nate jumping on his trampoline, but Nate came home from school on "red" again today and his consequence was that we took away all his toys, including his trampoline, for the evening. He has gotten in big trouble every day this week except for Monday. Wanna know why he got in trouble yesterday? He kicked his babysitter and his sister. Obviously, he got in big trouble and we had to come up with an especially creative discipline for that one. But--don't share this outside of our community--praise the Lord he can kick! Take THAT Spina Bifida! :)


Wednesday, January 26, 2011

Taking the scenic route

You may know Cassie. You may be a regular follower of her blog. You may know her because for Spina Bifida Awareness month, she featured our kids. 

She is an amazing person. I admire her for many reasons. We have a lot in common. We would be great "in real life" friends, if geography weren't so important. Her son, Caleb, is just months older than my Esther-Faith. And I think if they ever meet, Cassie and I may be in-laws some day. 

She wrote the following on her blog "Beyond Measure" today.

As she says in her intro, it is long. But it is WORTH IT. 

With her permission, I republish it here.


I am warning all of you ahead of time that this is long.  I'm asking you to avoid just "skimming" and glancing at the pictures.  Take a few minutes to read.  I think this will mean something to many of you.

I follow a lot of blogs, blogs done by other SB moms (and one dad) from all over the country...and a couple folks in Canada.  A shout out to you gals in Canada!  I love reading about all of these other kids that are living life with Spina Bifida.  I love reading about their many victories.  I pray for them when they are facing surgeries.  I care about all of these kids and their entire families.  Recently I have noticed that many of the moms out there are struggling.  It seems like the moms that have the younger kiddos, under 2 years old, are struggling the most.  It is to you that I am writing.

So many of you are hurting because your baby isn't sitting up yet, isn't crawling, won't roll over, can't stand up, and can't walk.  You are frustrated.  Beat down.  Exhausted.  Sad.

You feel like you are giving everything you have to help your child reach these milestones, but it's not working.  Or maybe you are beating yourself up because you don't think you are doing enough.  It's your fault.

I remember those days so well.  I cry sometimes when I read your blogs and I hear the pain in your words.  That pain is very familiar to me.

I had several friends that had babies right around the same time Caleb was born.  And I can vividly remember how different he was, even as an infant.  Caleb struggled to keep his head centered, even when he was laying down, he would just look to the right or the left.  He had to work so hard to keep his head straight.

I remember having a play date with some former co-workers and their babies could hold their heads in the center, but Caleb couldn't.  Something so simple.  My son couldn't do it.  I remember leaving that same play date crying.  And honestly I eventually stopped going to play dates altogether.  I didn't want to be reminded of all that was different about Caleb.

So, getting Caleb to hold his head in the center became my priority.

That was the goal we would work on.

As an infant, Caleb did not move his legs at all.  And I mean no movement.  They just flopped out to the side like a frog.

I saw how other babies would constantly kick their legs and could even stand up a little when held.  Not Caleb.  No movement, no feeling, nothing.  Just sweet little legs that flopped out to the sides.

That became my priority.  I just wanted him to try and use his legs.  That was the new goal.

Next was head control.  I called Caleb "bobble head" because the boy could not hold up his head.  It was just too heavy.

He required so much support.  I just wanted him to be able to hold his head up.  

That became my priority.  

My goal for him.

He was probably 7 months old before he could hold his head steady.

We bought him an excersaucer but he was just too unstable in it so we had to wrap blankets all around him. 

His PT had to make him a special seat to go in his high chair so that he would have more support when eating.

It felt like we were constantly having to do things, adapt things, to help Caleb.  Things that every other baby could do with such ease, was such a chore for my son.  Everything was a reminder that he was different.

The next priority was rolling over.  I worked and worked with him.  Desperate for him to just roll over.  Begging him too.  Bribing him with toys just out of reach so that he would roll over to get them.  Nothing.  I was convinced that he would never roll over.  While other babies his age were sitting up, crawling, and even baby couldn't even roll over.  Caleb was 10 months old when he rolled over for the first time.  It was to get a teddy bear that was out of reach.  I cried.  Rolling became his means of getting around for a long time.  He would just roll across the living room to get to what he wanted.  He found a way.

And then came the milestone that I thought would absolutely break me. Sitting.  Caleb could not do it.  I did everything the PT told me to do, I worked with him daily.  I prayed and prayed.  I asked family to pray.  I was desperate for him to sit up.  I remember calling my mom and just sobbing because I didn't understand why my one year old son could not sit up on his own.  Caleb was about 15 months old before he could sit up well on his own.

With every milestone reached, there was another one that needed to be worked on.  For every mountain he climbed, there was another one waiting.

Each goal became my priority.

Each mountain became my focus.

I made myself a calendar that listed all the things that his PT wanted me to work on.  I put the list on the fridge as a reminder of what I was supposed to be doing to help Caleb reach his goals...which were really my goals to begin with.  I would highlight the things I worked on for that day.  And I would beat myself up endlessly on the days that I didn't get to everything.  I felt like a failure when I didn't work with him enough.  I carried a heavy burden.  Every day.  Every time I went to the fridge, I saw that list, the things I was supposed to be doing.  A constant reminder that I wasn't doing enough.  I wasn't enough.

I think us moms are way to hard on ourselves.  I know I am.  This idea that we have to do it all, be it all, every single day.  I think all moms carry that weight but us moms with special needs kiddos have additional weight to carry.  We have to be caregiver, nurse, advocate, physical therapist, chef, maid, chauffeur, teacher, administrative assistant, mom, and wife.  And that's just naming a few.  We wear a lot of hats.

We have to be experts in UTI's, shunt failure signs, tethered cord symptoms, non-verbal learning disorders, and more. We fight for our kids.  We argue with doctors who think they know more about our child than we do.  We push therapists to get our child the braces and equipment they need. We deal with stares from strangers.

I hear how tired so many of you are.  How sad you are.  You love your child so much and your heart is breaking because he/she isn't walking.  Or sitting up.  Or talking.  Or standing.  Or whatever.  It's always something.  There is always something to work on, a goal to achieve, a milestone to reach.  A mountain to climb.  It's exhausting.

Caleb is 5 1/2 years old now.  I've learned over the years that Caleb does things in his own time.  He works hard and he does as much as his body will allow him to do.  And I've seen him climb many mountains.  I've seen him find a way.  I've seen him succeed.

 I've seen him find joy in mobility.

Something that many people would considered a burden, a hindrance, something that he is "bound" to, means freedom and independence to Caleb.

I've seen him do things we were told he wouldn't be able to do.

I've seen him do things I didn't think he would ever do.  Like crawl on his hands and knees.  He crawled on his belly until he was 3 1/2 years old.  I had all but given up on him ever being able to get his knees up under him.  But he did it, he got stronger, he figured it out.  In his own time.

 I've seen him graduate from HKAFO's to just AFO's.

And I have seen him walk.  I have even seen him run.

I've seen him get stronger and stronger.  I have seen him use legs that he can't feel.

And I have seen him redefine.

I don't have it all together, I still worry, I still beat myself up on occasion.  As Caleb has started school, I have found new things to worry about.  New goals to reach.  But I'm learning to just appreciate all that he is and all that he has accomplished.  My burdens aren't his to carry.  He isn't sad, so why should I be?  Caleb's a happy kid. He always has been.

Even when he couldn't hold up his head, he was still smiling.

Even when he couldn't sit up on his own, he was having fun rolling all over the place.

It didn't bother him that he crawled on his belly instead of his hands and knees, he still got to where he needed to go.

Getting a wheelchair didn't make him sad.  He loved it. It changed his life and his personality for the better.

So, to all of you moms out there that are just plain tired.  Beat down.  Sad.  Defeated.  Go look at your the precious child God has given you.  We have beautiful, strong, resilient, determined kids.  Our kids have and will achieve great things.  Our kids may never blend in with the crowd, they may always stand out, but they will change this world and the people around them.  They already have.  There is great joy in that.

Don't let yourself drown in the milestones.  Don't let each goal not yet reached consume you. Your little one will climb that mountain, just maybe not as fast as you would like.  So, take the time to enjoy the scenic route up the mountain, and anticipate the beauty and the joy that awaits at the top.

Sunday, January 23, 2011

You Will Never Walk Alone

In my last post, I mentioned that we had Brooklyn baptized last month. Honestly, I feel like I dedicated her to God long before she was born, but this day was still very special for many reasons. For one, we had her baptized with her cousin Nolan, who is only a few weeks younger than her. Watching my husband and his brother stand side by side, their heads bowed in prayer and their arms tenderly holding their babes -- an image I'll never forget.

It was also special to have our church promise to help raise our daughter to know the Lord, to support her -- a church that has been praying for her before they even saw her face. This group of Christians LOVE our little Brooklyn so much -- some of them "claiming her as their own" because they have prayed so much for her.

We are so blessed to have such an awesome support system around us, and I couldn't be more thankful that my daughter will grow up with such faithful people loving and caring for her.

At the baptism, a family friend and her daughter sang the most amazing Point of Grace song in honor of Brooklyn and Nolan's day, and I wanted to share the lyrics with you. As you will see, the words are meaningful on so many levels -- for us as parents, for our little lambs.

I know I've spent a lot of time praying that my Brooklyn will learn to walk on her own two feet, but I am also so very grateful that God promises our children will never walk alone. Rest in that blessing, my friends!

~Lisa (@ Heaven Sent)



Along life's road
There will be sunshine and rain
Roses and thorns, laughter and pain
And 'cross the miles
You will face mountains so steep
Deserts so long and valleys so deep
Sometimes the Journey's gentle
Sometimes the cold winds blow
But I want you to remember
I want you to know

You will never walk alone
As long as you have faith
Jesus will be right beside you all the way
And you may feel you're far from home
But home is where He is
And He'll be there down every road
You will never walk alone

never, no never

The path will wind
And you will find wonders and fears
Labors of love and a few falling tears
Across the years
There will be some twists and turns
Mistakes to make and lessons to learn
Sometimes the journey's gentle
Sometimes the cold winds blow
But I want you to remember wherever you may go

Jesus knows your joy, Jesus knows your need
He will go the distance with you faithfully

(Words and Music by Lowell Alexander)

Tuesday, January 18, 2011

How do you Redefine!?

Some of the comments from my previous post. Go add yours now!!: ) if you dont know what im talking about scroll down a little and read the post about It's that time again.

Colleen said...
I love the catch phrase. It is brilliant and perfect.
My word for Nate has always been HOPE. Recently, he has begun to jump. In the middle of the floor, without holding onto anything, and he gets air. Awesome.

January 17, 2011 6:00 PM

Nicole said...
I love how you added the word "defy" to the silhouette painting of Katelyn... that describes her to a "T". She has defied the odds by surviving in an orphanage... she continues to amaze us! For Courtney, I think the word "sunshine" describes her best. Funny, because that's actually what her Chinese name means. She is so full of light and life. She shines brightly (and rather loudly at times!). :)

January 18, 2011 11:23 AM

Sara said...
My word for Ethan is "love." I love Ethan more than I could ever truly express. Ethan loves everyone with a blinded heart, no matter the difference or the likeness of each person he meets.

January 18, 2011 8:20 PM

Holli (and Mark) said...
All of these are worthy descriptions for our children. The ones I most identify with for Alex is Hope and Faith! The diagnosis was initially devastating and we were given such a grim view of what his future might be like. We held onto hope and faith that God knew what He was doing when He gave us Alex and are sooooo extraordinarily blessed! Now whenever I worry about some aspect of his todays or tomorrows, I remind myself Alex IS our hope and faith!!!

January 19, 2011 5:29 AM

Monday, January 17, 2011


It had all the makings of a busy weekend. Lots of appointments, plans, and things to do. Including two birthday parties for the new five year old in the house.

We left the boys' therapy appointments and made our first stop at the party store. Parking in one of the 15-minute spots, we swiftly made our way through the store in search of a game that roughly 12 children of varying ages and ability levels could play. We had no luck. So we headed to the store to pick up the first of two birthday cakes. 

Before you judge, let me explain. Yes, I almost ALWAYS make the birthday cakes. And they almost always taste better than anything store-bought, but I BAKE. I haven't done an elaborate decorating job in years. My sister--who is fantastically creative and gifted with frosting--decorates. We're a team--a GOOD team. I bake. She decorates. BUT, Kristen was out of town this weekend. So, knowing I needed a couple of elaborately decorated tinkerbell cakes, and knowing my decorator was out of town, I turned to the professionals. It was actually Tim's decision. And he even called the bakery where my sister used to be a decorator. 

That said, I saw the cake. It looked nice. I paid for the cake. The price was kind of low. I called Tim on the way to pick up the second cake. He sent me back to the first place. They made the wrong size. So they make a second cake--on the house. 

At the second store (an ice cream store), we had place a special order. Because Esther-Faith cannot have chocolate, Tim ordered a cake with all vanilla in one half and chocolate and vanilla in the other half. And he ordered it to also be elaborately decorated with Tinkerbell. I walked in. She showed me the cake. Esther-Faith's name was spelled wrong. I asked for it to be fixed. I was treated poorly by the barely-older-than-my-son employees. 

Me: "Is there any way you can fix her name."

Employee: "Ummmm. Well, I don't know."

Me: "It's kind of important that her name be spelled right on her birthday cake."

Employee: "Well, it's close."

Me: "Right. But I did not order and pay for a cake that had my daughter's name almost right."

Employee: "Well, ummmm, I'll see what I can do."

Me: "Her name is spelled, "E-S-T-H-E-R-hyphen-F-A-I-T-H. Do you need me to write it down for you."

Employee: "No. It's right here on the slip."

(And she showed me the slip. And there was her name. Spelled the right way.)

Me: (a little dumbfounded) "Okay. Thanks for fixing it."

Isaiah called the series of events a "cake-tastrophe."

After that cake was fixed, we headed home. Once home, we ate lunch, and planned out the rest of the day. Where we would go. What we still needed to buy. What chores needed to be completed before company showed up. Etc... 

Then I started prepping the food. Lasagna for 30. Salad. Ice cream. We did chores and rearranged rooms. Eventually, we headed out. We had four stops to make. We had a plan, and even with five of us, it only took about an hour to get everything done, and then we headed back home. 

Sunday dawned. I made cinnamon rolls for breakfast. We planned to go to church, but time got away from us and we settled into chores and finishing preparations for the parties. There were two. One for Esther-Faith's friends from preschool and daycare at 2 p.m. And one for our friends and other grown-ups who care deeply about our daughter at 5 p.m. 

Around 1 p.m., Esther-Faith got sick. Not just sick, but sick like she did a month ago. Sick like she did a year ago. And we started calling everyone who had sent an RSVP to cancel the party. We were all upset. Esther-Faith was crushed. She was exhausted from being sick, but still wanted a party. By 2:30 or so, she seemed bounce back to her usual self. Bounding around the house. Eager to get her party on. Tim and I sent some tentative messages. To my mom. And Kate. And some close friends. That if they were feeling brave, we would still love to see them.

You know, there are times that I am just astounded by the support we have. People who show up and love us no matter how hard life gets. No matter how messy or challenging or tiring or scary or exhausting. They're here. Or wherever we are. To make us laugh. To help ease our nerves. 

Today, Esther-Faith played with all of the "prizes" that we bought to give her friends who won the party games. We did cut into the ice cream cake. But there are still two white cakes with white frosting and elaborate Tinkerbell decorations. Uncut. Untouched. In the garage (which is below freezing). We've got loads of salad left. And thank goodness the 14-year-old eats enough for an army, because we'll probably only have leftover lasagna for a couple of days instead of weeks. 

We're still on high alert. She threw a temper fit to end all temper fits today. Her appetite is still a little off. And she's not entirely acting like herself. But we had an MRI and a shunt series a month ago. I'm almost sure her shunt is ok. The rest of it? I'm not so sure. We've consulted Dr. Google about complications of  Chiari Malformation and allergies and other worst-case scenarios. We've started a bladder wash. And we take her temperature just about every hour. We ask questions about her tummy and her head. She gets irritated by all of the concern. 

But, we just don't know. She's not typically a sick child. For all of the complications of Spina Bifida, she has been a remarkably healthy child over the years. We'll watch. And wait. And trust our instincts. If action needs to be taken. We'll do whatever it takes.

So, Esther-Faith turning five years old wasn't the spectacular celebration we had envisioned. Cake issues. Cancelled parties. Illness. But, Esther-Faith still turned five. She is still our light and joy. She is still Isaac's best friend. And the center of Isaiah's whole world--his hope. Just as I didn't plan on her, no matter how bad my plans go for her, she is still perfect.

All this also comes from the Lord Almighty,
whose plan is wonderful,
whose wisdom is magnificent.
Isaiah 28:29

Waiting excitedly for Kate to come in the house.

Opening presents and playing with Mimi.

Karaoke with Jim.

Tinkerbell ice cream cake.
With her name spelled the right way.

Its that time again

It's that time again!!!
Spreading the awareness!!!
I hope you've gotten your awareness products!!!

As I start the beginning stages of the shirt order I wanted to share with you where the "catch phrase" came from.
Redefining Spina Bifida has been seen on blogs, facebooks and maybe even overheard in conversations.
As we were trying to come up with shirt ideas, I was sitting talking to my husband about the message of these shirts. What was the point. What I wanted to say. What I felt we all wanted to say.
I pictured in my head a dictionary page with the words spina bifida and of course the usual definition. Then I pictured a big huge red X written over that definition and the words that you now find on the back of the shirts written out.

I am touched as I pop on facebook or check blogs and see people linking up or posting. Amazing!! I really believe that we can change the definition of Spina Bifida. Maybe not the ones in the medical books. Maybe they will always say cant, defect, disabled. But the definition that lives in people's minds.
Maybe those are the definitions we will change.
Can, Able, Beautiful, Hope, Faith
Maybe those are the ones that really count.
I believe our stories are important, I believe that blogging, facebook, shirts, tote bags and all those kind of things really are important. That this is all part of our life, our process, our amazing life and part of our responsibility to help change the way people view spina bifida.

So what would you change? What words would you use? What has your child done recently that has helped redefine spina bifida?

I'll get us started.. I look at Toby and I see STRENGTH. Toby is walking with arm crutches when we were told just a little over 1 1/2 years ago that he wouldnt be able to walk at all.
Thats how we are redefining spina bifida!!


ps if you have no idea what im talking about with the shirts, tote bags and stuff. pop on over to to find out!!! Remember you only have till February 1!!

Saturday, January 15, 2011


It's really happening..... after a week of being snow and ice bound in Atlanta, we made it down to Children's on Thursday for Madilyn's Pre-OP appointment with Anesthesia. The nurses were actually glade to see us. Most of them spent several days at the hospital and were happy to see some new faces. Madilyn got the royal treatment! We were not rushed and it gave Madilyn a chance to just talk and ask questions. She also voiced her opinion about the mask they use to put her to sleep. SHE DOES NOT LIKE tastes horrible....and yes we have tried every flavor they have! After getting cleared for surgery we headed down to the lab for some blood work. Madilyn was well hydrated and only had to have one stick! (After 6 years, I have finally learned to make her drink, drink, drink before we go for blood work!) Not one tear was shed.

It's real now.... Madilyn will be headed to surgery on Thursday, Jan 20th. Her 4th de-tethering of her spinal cord. We are so hopeful that she might regain the feeling in her right foot.

Now it is time to double check the lists I have already made....the ones I have made during past hospital stays when I wished I had this and that. Sticking to my lists calms my nerves in some strange way. I can't really explain it....

Leaving my other children behind is so hard. Especially since I will miss Tyler's 14th birthday. We are going to celebrate it the day before surgery but it will be sad not to be with him...we have this crazy tradition that we sing the "Happy Birthday" song at the moment you were born and you have to listen to Mom tell you all about the day you were born....even what I did the day before. This will have to be a phone call. These are the moments that make this so difficult on me as a Mother.

Even though we have been through this 3 times is never easy. My emotions are already beginning to get the best of me. Just typing my post this morning has been hard. I know what is coming. Madilyn knows what is about to happen. Last night she told us she was not going! I reminded her that we were going to make a new "Build-A-Bear" on Monday....its shameful that I have resorted to bribery. Thank goodness that a new bear works...I am afraid of what it will take in a few years!

We made every effort to let Madilyn enjoy the snow this week! Maybe this wild Atlanta snowstorm was one of those tender mercies from above. We made some wonderful memories that we can talk about when things are hard.

Best Wishes to each and everyone one of you...wherever you are on this journey at this very moment in time!
Madilyn's Mom

Monday, January 10, 2011

Guest Post

Esther-Faith attends preschool at a VERY special school with exceptional teachers. In her classroom there are children with every range of disability you can imagine as well as a few peer models. She receives PT, OT, and when necessary, speech therapy right in the classroom. We chose the school because of the physical therapist. And we kept her there because of the teachers and the education she has received.

I love her preschool and will mourn the day she is no longer a student there.

Every morning when I drop Esther-Faith off at school, a little boy named Eamon greets us. "Hello, Esther-Faith!" he says. "Hello, Miss Karin!"

Their teacher shared a story with me about Esther-Faith and Eamon. During dress-up time, Eamon was dressing as a firefighter. Esther-Faith was ok with that idea, as long as his outfit included sparkles--so, she added some. Eamon didn't mind. And once "circle time" started, the teacher was having a hard time getting Esther-Faith and Eamon to pay attention. She said to Eamon, "During circle time, we need to have our eyes on the teacher." To which Eamon replied, "I only have eyes for Esther-Faith."

Eamon simply melts my heart every day.

We've become friends with Eamon's parents. They are what you might call "good people." The kind of people we want in our life even if our children weren't sharing diagnoses. Mike and Jenn are--in a word--wonderful.

Last night, Mike shared the following on his FB page. With his permission, I share it with you.


My wife and I occasionally watch "16 & Pregnant" and "Teen Mom". While it's hard not to empathize with the teen parents, Jenn and I often look at each other and wonder what these kids would do if their baby were born with a birth defect or other serious health condition. Of course, none of the parents on the show have to deal with these issues. I find this very convenient.

Jenn and I were in our 30s when Eamon was born with Spina Bifida. Both of us are college graduates with good jobs. We both have supportive and loving parents. And you know what? Despite having all that going for us, it has definitely been everything we can handle both mentally and emotionally. At times, the stress has threatened to tear our marriage apart. All the while, we know Eamon's condition could be MUCH worse.

Love has seen us through, and has forced us into a level of teamwork most parents wouldn't understand. As I watch the shows, I honestly don't know how teen parents would handle it. That's probably for the best. When we received Eamon's diagnosis (before birth), there was a lot of "Why us?" The only answer that keeps me going is because God knows Jenn and I are strong enough to make sure Eamon grows up strong and smart, confident in what he can do in spite of the limitations that fate tried to put upon him.

No, it is not the life we would have chosen. But it's one I'll never be willing to trade.


From Karin (at the HennHouse)

Sunday, January 9, 2011

Dealing with Disappointment

Hi all! I have been MIA for quite a few weeks now, and there are several reasons for that -- work, the holidays, family obligations, a baptism, a shunt...

Yes, Miss Brooklyn ended up with a shunt. I have been okay with it for the most part, but I have needed a little time to get to a good place about it. Not that I was ever in a bad place. I just wanted to be truly okay before I went writing.

Don't get me wrong, I want to be real with my feelings, but I also like to take some time to reflect and make sure that my words are glorifying God. Until I get to that place, I tend to be quiet.

I can't say I was mad about the shunt; I was just, well, disappointed.

I know a shunt is a good thing when it is needed. I know it saves lives. I know it is saving Brooklyn's life right now. But my husband and I were so programmed into trying to avoid the shunt, that I somehow thought we weren't going to need it.

That Brooklyn was going to be the exception.

So many were praying for that very thing, but obviously, that wasn't God's plan. And as every day goes by, I can see why.

Miss Brooklyn is a much happier baby these days. Of course, she looks better -- her head size has gone down and her veins are less prominent -- but she also seems more comfortable. She smiles all the time and sleeps great. She has strong head control and is interacting with toys. She is still my Brooklyn - she hates having her diaper changed and prefers her Mommy ALL.THE.TIME. -- but I can tell the shunt is supposed to be a part of her.

She needed it.

I can say that now.

Funny how something that looks and feels so unnatural is truly improving her quality of life. Medicine is an amazing gift, and as much as every ounce of my being felt like this "machine" had no place in my baby's head, I can see now how God has used medicine to provide healing.

Yes, I wanted Him to be the healer, but I will accept the alternative He offered us and better yet, I will be grateful for it.

My heart needed to catch up with my head, but I am finally at the point where I accept that this "machine" needs to be a part of Brooklyn just as much as her legs, her fingers, her heart. All work together to give my daughter the life He intended.

I was disappointed, and if I am being honest, I think I always will be. But I will continue to trust, to have faith, and to hope. And why wouldn't I? Every morning, I am greeted with the most beautiful little smile that constantly reminds me that everything is more than okay.

Everything is exactly how it should be.


~Lisa (@ Heaven Sent)

Tuesday, January 4, 2011


Hello to all you amazing people out there.

Just wanted to let you know that Shirt Orders for redefining spina bifida will be the last 2 weeks of january. I will be reguarly updating on facebook via urbanupcycling and in my status if you want to keep a check to make sure you dont miss anything.

we will be posting a flyer soon to help you spread the word. email to friends, sb organizations and whoever you think might be interested.

remember this time around the extra money earned will go to the sb organization that raised the most awareness by purchasing the most shirts. so make sure you let your local chapter know!

Monday, January 3, 2011


Shopping at Target yesterday, an employee approached us as we approached the check out. At first, I wasn't sure what was going to happen. We often get stares. Sometimes comments. Sometimes, people walk big circles around us. I'll admit, we aren't your conventional family. But she reached her hand out and touched Esther-Faith's curls. Then she asked me, "What does she have?" Without hesitation I responded, "She was born with Spina Bifida."

She touched my arm and with excitement she said, "My daughter was, too!"

I could have hugged this woman.

We talked for about 20 minutes. Exchanged email addresses. I gave her this web site. Her daughter is 21. She has endured some 70 surgeries--more than half of them on her shunt. And she is an undergraduate at a university away from home. I was encouraged by her story, and relieved by the small world we live in. It was a great connection to make, and I hope to see Connie again and to meet her daughter.

On another note, we have finally celebrated Christmas with both sets of parents (everyone got one of these shirts from us for Christmas), and I can share these photos!

by Karin.
(from the HennHouse)

Saturday, January 1, 2011

Watch the Project E.L.I. Documentary

A few months ago, you may have had the opportunity to read up on this special documentary based in Arkansas about parents being prenatally diagnosed with spina bifida. And some of you took a step further by ordering one of our "Team Eli" tshirts for our fundraiser and one of our blog families in California requested copies of the documentary to distribute to her doctors in her state. Now, you can view the documentary online on YouTube! Please take a moment to watch this documentary (and grab a kleenex because you know these feelings first hand) about SB and the story of our late son, Eli.

Click here to view Documentary on You Tube:

If you would like to request copies of this DVD for your medical personnel in your state, please please please email me at It is absolutely free and the purpose of this DVD is for medical teams from everywhere to hand out to other families being diagnosed as we all were. This DVD was created to give them HOPE before a decision of termination is made.

Much love to my SB families in blogland. And Team Eli tshirts are still available if any of you missed out on the last order. Just shoot me an email-


A New Year.....renewed HOPE!

Happy New Year! Just saying those words give me a feeling of renewed HOPE. It's a feeling that flows through me from my head to my toes. There seems to be something magical about starting New Year. I am not sure I even have to words in me to describe it. The only word that comes to mind is......HOPE!

Reflecting..... I find myself reflecting on the year and what we have experienced in the world of Spina Bifida with Madilyn. It was not the easiest year for her. Bowel surgery took a physical toll on her for about three months. But, she braved each obstacle with grace and strength. She developed an abundance of self confidence. She passed the swim test at the "Y" and she entered the first grade.

The year didn't end the way we planned. Madilyn has developed "Charcot Arthropathy" in her right foot. She has been a a cast for three months. Two of the broken bones in her foot have healed....the other two are being a little more difficult. This is very dangerous for Madilyn because she can not feel her right foot. It also frustrates Madilyn....because she is so tired of her cast. After spinal surgery on Jan 20th, Madilyn will have a bone scan and bone density test to determine the amount of damage her bones in her foot have taken. We are hoping she may regain some feeling in her foot once her spinal cord is de-tethered.....HOPE!

We as a family, choose to see HOPE....

It would be easy to get discouraged and maybe tomorrow I will have to go back and reread this post. I could cry right now thinking about insurance and new deductibles that will have to be met. I could cry that I could not get all the medical bills from last year paid off by the start of this year. I could cry because I don't have a crystal ball and I don't know how we will handle it all. I could....the list could go on and on......

On this first day of this NEW YEAR, I am going to just choose to HOPE! That is what this journey leads us to. We will all have moments of fear and doubt. But, when we feel like there is no more we can endure, we have each other....and that in its self is reason to have HOPE!

Best Wishes!